So many things happen when you have a child with a debilitating disease.  Depression.  Fear.  Loss.  Isolation.  Things you expect.  But what I didn’t expect when my son was diagnosed with Congenital Heart Disease was the joblessness, financial hardships and complete dependance on the charity of others that can sometimes happen.  Three years into this and we have somehow lost our sense of dignity.  Three years into this and we are still in the woods.

A good man wants to earn the food he puts on the table.   What if he can’t?  What happens to the heart of a man who has been rejected by job after job?




In theory, he leans into the Lord and thanks Him for the daily provision.  He praises God for sending the ravens day in and day out with just enough to make it through the day.

But that is getting harder to do.

A good woman wants to provide for her children a solid and lovely home.  A place full of safety and enrichment.  A haven set apart from the rest of the cold, dark world.  But what if she is so overcome with the needs of her sick child that she can’t seem to keep her head above water.  What does she do if her job has become simply to keep everyone alive by the end of the day?




I know why the Israelites got sick of manna.  I am sick of the manna.

I didn’t earn it.

I didn’t work hard for it.

I didn’t do anything to deserve it and I have no claim over it.  Sometimes being on the receiving end becomes a burden in and of itself.

Being vulnerable and unable becomes a source of shame.  What God intends to sustain us begins to have a bad taste in our mouths.

God has been breaking down my husband and me.  For the past three years he is tearing down our walls.  Knocking in our secret rooms.  Destroying our battlements.

I thought he was going to begin reconstruction soon, but I guess he isn’t finished yet.

Having our little Jack has brought me through heaven and hell.  I am dragged through the brambles one moment, and flying on the tips of the wind the next.  And in-between, I am wading through murky waters.  Fighting for his life was the easy part.  I knew my mission, I was ready to die to keep him alive.  I would have gladly given my own heart and lungs if I thought they would save his life.  No questions asked.

The hard part is learning to live in a new land, with new kinds of people, with no money and no idea how to make it.  The hard part has been leaving behind the life in the ministry and having to suddenly reinvent ourselves and what we do to earn a living.  The hard part is wandering in the wilderness when we long for a promised land.

It seems that everywhere we go, we become a burden to someone.  Our baggage and needs follow us.

I know, because we travelled the country for a year and no matter how long we drove and how many states we passed through, our troubles would always catch up.

A special needs child creates a special needs family.

This post is for all of you who are living between a rock and a hard place.  Especially for you mothers and fathers of special needs children.  Right now, God has called you to do something so hard that you cannot even begin see an end to.  God has called you to do hard things.  Because you are the only one for the job.  And because he is preparing you for something just around the corner.

Something good.

Something that requires in you a certain readiness that you didn’t possess before this crisis hit.  God is helping you to live a good story.

To write a good book of your life.  To be the author of something meaningful.

When the voices in my head tell me that there is no hope.  The spirit of the living God covers me with the corner of his robe and he shouts over me LIVE!

And the breath of life fills my deflated soul.  Hope trickles, till is floods, till is cascades through me and then I know.  I know without doubt.

“And when I passed by you and saw you wallowing in your blood, I said to you in your blood, ‘Live!’ ” Ezekiel 16:6

And in the middle of my wallowing I begin again to live.

God knows the plans for me.  God has given me a hope and a future.




So for you, special needs parent, and for you, person in crisis, know this:

“For I know the plans I have for you, declares the Lord, plans for wholeness and not for evil, to give you a future and a hope.  Then you will call upon me and come and pray to me, and I will hear you.  You will seek me with all of your heart, I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile.”  Jeremiah 29:11-14

You and I are facing a season of darkness but God bring light to that darkness.  Step back from your brokenness and look down on your life from God’s high perch.  What you and I are going through right now is just a flicker in time.  It is a fleeting moment compared to the vastness of eternity.  But it is important.  If it wasn’t, it wouldn’t be happening.

So now what do you do?  I don’t know really.  But I can tell you what not to do.

Do not suffer in silence.  

Do not go it alone.  

And, under no circumstances, should you put on a brave face for the people who love you.  

If no one knows that you are in need of help, chances are good that no one will give you help.  Find someone, not just anyone, but someone with whom you can entrust your most secret feelings. And ask them to be an ear for you.  Someone you can text when you need a quick prayer.  Someone who will regularly contact you to help.  We are, after all, a tribe.  Not meant to be solo.  Coming from an introvert, this is really saying something.

Then when your head is just above water and you see a light, know that that light was always there.  You just couldn’t quite peak at it through your pain.  And now it is time to turn around and look for someone who looks like you.  Someone who is living in the middle of the kind of hurt you are healing from.  Love them and pursue them.  Share the hope you found.

Bless you.  And bless someone else, too.

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